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reneeg
@reneeg

Posts: 1
Joined: Oct 16, 2016

MAC antibiotics and side effects

Posted by @reneeg, Oct 15, 2016

Hello. My name is Renee and I live in Australia with my husband who was diagnosed with MAC in Sept 2014. At the same time he was also diagnosed with Hodgkins Lymphoma, COPD and hereditary emphysema. He also has adrenal failure we’re told from the chemo. He is currently in hospital on a iv antibiotic drip of tigecyline and oral antibiotics. My question for those of you that have taken rifubutin and moxifloxcin. How long did your side effects last? Did they ever diminish or completely go away? One of the reasons he is in hospital is due to the severeness of his side effects. Constant headache, muscle aches, body temp regulation and shortness of breath. He has been on the tablets now for a 4 weeks. Thank you!!

REPLY

I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I’ve lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn’t and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I’m 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?

@softballqueen

I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I’ve lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn’t and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I’m 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?

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Hi @softballqueen! I wanted to point these two threads about MAC out to you because they’ve been very active and I think you may be able to connect with other people experiencing similar things:
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/
https://connect.mayoclinic.org/discussion/hello-i-have-just-joined-the-group-i-was-diagnosed/

I suggest you skim through some of the posts and reach out to some of the users in those threads 🙂 Please let me know if this helps!

@softballqueen

I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I’ve lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn’t and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I’m 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?

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My name is cola, like you I’m diagnose w/MAC. This is my 2nd week since I start the meds. Try to drink plenty of water and try to eat before you take the meds. I know the side effect of the meds is bad. I can’t tell that much b/c this new to me too. I quit my job b/c I so tired and weak.  I will pray for you. 

@softballqueen

I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I’ve lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn’t and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I’m 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?

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So very sorry you are experiencing these awful side effects.  I experienced the same thing.  Ended up in the hospital with severe nausea.  Waited a month….tried them again. Same thing.  That was last May,2015.  Perhaps you need a second opinion as some Lung doctors take a wait and see approach.  I am still not taking the drugs.  I see a new MAC Specialist tomorrow at Emory/Atlanta and am praying for a good report.  I applaud people who can tolerate the drugs, but my body simply could not .  Get a second opinion. Blessings!!

@softballqueen

I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I’ve lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn’t and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I’m 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?

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Hello Queen, Welcome to the Forum! I also have Bronchiectasis and MAC/MAI .. plus Reactive Airway Disease. Truth is I don’t think anyone knows which comes first the chicken or the egg. Did I have the Bronchiectasis first and it became the breeding ground for the MAC .. or the other way around .. who know .. and who cares .. It’s just there and we all have to deal with it!

For myself I was diagnosed in 2007 but was so very afraid of the necessary antibiotics. At the time I did NOT have the support and information of a Forum like this so fear led me to not start the antibiotics until I got a 2nd serious abscesses mycobacterium. After being diagnosed with the 2nd mycobacterium I had no choice and began the journey taking 4-5 antibiotics for 30 months. I lost 18% of my body weight for which I was FORCED to eat my beloved ice cream every night to maintain my weight!

I can only speak for myself .. but yes I was more tired .. I needed a good 10 to 11 hours of sleep at night .. the antibiotic Rifampin did create sleep disturbances for me .. I “ate to live” rather than “lived to eat” but I made the effort that whatever went into my body was healthy and nutritious for my body.

I have now been “stable” and off antibiotics since May 2014. Was it all worth it? You bet!! I am SO aware that we are all given just one body in this lifetime .. and we must take good care of it .. so it can take care of us! During this initial period just know that we are all on this journey together .. keep coming back to this Forum .. and to the Forum at
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=7
.. there are really good supportive people on both Forums! Read as much as you have the energy to .. knowledge is power. For now .. just put one foot in front of the other .. it DOES get better! I KNOW because it is GREAT for me! I have fun .. I travel .. and I love life today .. tomorrow .. and EVERY day! Sending you a Big Hug because I know it is tough right now! Katherine

@softballqueen

I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I’ve lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn’t and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I’m 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?

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more information and support with an 800# can be found on the bronch and NTM social community launched by the COPD foundation and NTM information & research foundation.

@softballqueen

I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I’ve lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn’t and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I’m 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?

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Im very sorry for all the trouble you are having. Seems like the.opposite of your symptoms have happened to me. since i started taking the antiobiotics i feel a lot better. I ‘m not coughing as much as before. I weaned myself off sugar free cough drops. I could have bought stock in them. I was going thru a bag a day. I still walk everyday and i work everyday. I will put you in my prayers hoping that things start looking up for you.
..

Liked by brigby

@softballqueen

I have had bronchiectasis for 2o years with chronic cough/mild shortness of breath. 2 years ago my PFT dropped 10%, then 11% more last year and I am now @ 59%. This prompted my pulmonologist to do bronch which revealed MAC. I have been on 3 antibiotics for almost 2 weeks and can barely function. I’ve lost 7 lbs and have 0 appetite due to nausea all day long. I tried to play tennis over weekend and couldn’t and have to quit my softball team as the fatigue is overwhelming. I work 4 days a week at an administrative job that I love and wanted to continue 3 more years until I’m 65, but I often cannot make it through a full workday now. The treatment for me really is worse than the disease and to think about doing it for at least 18 months. Can you tell me your experience with the side effects and whether or not they lightened up?

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Thank you Sophie, and I happy for you that you can still work and walk everyday. I quit my part-time job since I was diagnosed with MAC. I tried to look on the bright side but sometimes when I think about it and feel my cramping on my stomach is not easy. Thanks for the prayer.

Welcome to Connect @reneeg. It must be so difficult to see your husband struggling with the side effects of the anti-biotics treating MAC. I am tagging a few fellow Connect members who can share their experiences with you and offer support along this journey. Please meet @katemn @Paula_MAC2007 @dianeray @heathert @kwilbur @donnavm @laneyk @e345l and @digmeme.

I also encourage you to read the main discussion about MAC where you’ll meet everyone. Even reading through the messages may give you useful information, and of course you’re always welcome to add your message here too. “(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS” – http://mayocl.in/2cwX36M

@colleenyoung

Welcome to Connect @reneeg. It must be so difficult to see your husband struggling with the side effects of the anti-biotics treating MAC. I am tagging a few fellow Connect members who can share their experiences with you and offer support along this journey. Please meet @katemn @Paula_MAC2007 @dianeray @heathert @kwilbur @donnavm @laneyk @e345l and @digmeme.

I also encourage you to read the main discussion about MAC where you’ll meet everyone. Even reading through the messages may give you useful information, and of course you’re always welcome to add your message here too. “(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS” – http://mayocl.in/2cwX36M

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I started Ethambutol , Rifampin and azithromycin in early August. I felt nauseated and lost 9 pounds the first 3 weeks ,up my Mayo doc encouraged me to try to stick it out as usually the side effects subside.

I now feel much better, not as great an appetite as I had before the meds, but I eat healthy and a side benefit is my weight is now where I like it to be. Not a great way to do it, but I’m not that hungry, so with exercise and healthy food I maintain and work at it to keep my weight up.

The drugs appear to be working slowly, my cavity is stable in diameter and thinner in cavity thickness. So this small downward change is positive. We take the good news we can get!

Still a bit tired, but part of that might be being 70. Back to work part time at the homeless shelter. Life is ok on the big 3! Not perfect, but ok. 🙂

Hello Renee .. so glad you found our Forum! It sounds like the two of you are really going through a tough time! I was diagnosed in 2007 and unfortunately due to lack of knowledge and information did not go on the antibiotic treatment until October 2011. I was on 4-5 antibiotics for thirty months due to the severity of my condition. I was on: : Azithromycin 250mg/Avelox 400mg/2-Rifampin (rifubutin) 300mg/Amikacin 2ml-inhaled and Ethambutol 800mg.

Due to previous difficulty adjusting to drugs I chose to add just one antibiotic per week so that I would know which drug was/if caused a side effect. Yes I did have fatigue, sleep disturbance, loss of appetite .. BUT in time I could deal well with my life .. working out and living life! Now I have been “stable” on off ALL antibiotics since May 2014 .. so there IS life after the treatment!

I would suggest as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side. Please do keep coming back .. you will find really kind supportive people here who will support you through this journey. Your husband is very lucky to have you by his side and be his advocate! I have been this advocate for my husband for many years as he has struggled with various health issues. Sending you both a Big Hug in this tough time. Katherine

You can find the link at:
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=13

I was finally diagnosed and started treatment in June 2015. I took Rifabutin, Ethambutal, and Azithramycin. I am not familiar with the other drugs you said your husband is on. After I started the drugs and had improvements, I was able to go back to half way regular life by pacing myself. I did not experience the side effects you mentioned your husband has. I just felt tired and no energy. My appetite was poor and I lost about 30 lbs. After awhile that improved. When I was able to get off O2 and move around more, I was able to resume some of my usual activities. I am a musician, play flute, and I was able to play for a concert last Oct. After 14 months on the medicines, I was able to discontinue the meds. I am doing so well now. I feel better than I have in the last 3 years. I have noticed that you are the only one that has mentioned Rifabutin. Everyone else seems to have been given Rifampin. My worst complaint about Rifabutin was the cost. I hope your husband will begin to feel better. It sounds like he has several problems going against him. My health has always been good until MAC. No other chronic illnesses except for stomach problems. I feel blessed. I look back to a year ago and the difference is amazing. It takes a while, but there is hope in sight. I hope this helps a little. Keep in touch.
Elaine K.

@colleenyoung

Welcome to Connect @reneeg. It must be so difficult to see your husband struggling with the side effects of the anti-biotics treating MAC. I am tagging a few fellow Connect members who can share their experiences with you and offer support along this journey. Please meet @katemn @Paula_MAC2007 @dianeray @heathert @kwilbur @donnavm @laneyk @e345l and @digmeme.

I also encourage you to read the main discussion about MAC where you’ll meet everyone. Even reading through the messages may give you useful information, and of course you’re always welcome to add your message here too. “(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS” – http://mayocl.in/2cwX36M

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Hi, I was diagnosed with MAC, COPD and Sarcoidosis six months ago – have been on Clarithromycin 500mg, Ethambutol and Rifadin now for almost 5 months. Insomnia is a problem, no appetite but otherwise okay. Very slight improvement on my last CT Chest Scan – continuing for the moment, although Spec. is talking about Steroids which I am not happy about. Good luck. Jo

@colleenyoung

Welcome to Connect @reneeg. It must be so difficult to see your husband struggling with the side effects of the anti-biotics treating MAC. I am tagging a few fellow Connect members who can share their experiences with you and offer support along this journey. Please meet @katemn @Paula_MAC2007 @dianeray @heathert @kwilbur @donnavm @laneyk @e345l and @digmeme.

I also encourage you to read the main discussion about MAC where you’ll meet everyone. Even reading through the messages may give you useful information, and of course you’re always welcome to add your message here too. “(MAC/MAI) MYCOBACTERIUM AVIUM COMPLEX PULMONARY DISEASE/BRONCHIECTASIS” – http://mayocl.in/2cwX36M

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Hello Jo, if you were replying to Renee .. thank you SO much for jumping in and adding in your experience to help her on her journey!

If you are new:
Welcome! Glad you found our Forum! I would encourage you to read the pages of the past posts to find out some pretty good tips on how others have handled various side effects of our disease .. knowledge is power .. I think it really helps on this journey of ours!

I can only speak for myself .. but I also had sleep disturbance .. and it has continued even after going off the antibiotics .. I am now “stable”. As I have posted I really don’t know if the continuation of sleep issues is the normal aging process .. or a result of being on the antibiotics .. doesn’t really matter .. I have sleep problems every night! So being an avid googler I read one place that it had been recommended to a woman from her Naturopathic Doctor that she use the brand name TwinLab Magnesium 400mg tabs nightly. I now use ONE TwinLab Magnesium 400mg tab plus half an over the counter Unisom Sleep Aid tab (I purchase the generic brand blue one that I can bite in half) .. AND WOW! I am able to get to sleep plus get back to sleep when I frequently wake up at night! The TwinLab tabs have really helped me .. can’t say they would for you .. but do be aware they will result in looser stools!

The steroids .. my guess .. it is not for the MAC .. I have not heard anyone speaking of it being prescribed for our disease. The only time I took steroids was when I had terrible pneumonia in 2003 .. as a result I ended up with GERDS. Have NO idea if steroids had anything to do with it .. BUT you might discuss steroids potentially causing GERDS with your doctor. Because ALSO MAC and GERDS are commonly seen together. Also you might try googling steroids to see how best to cope with the side effects etc. That is what I always do .. BUT don’t get freaked out .. you NEVER get all the problems they talk about! Be sensible and just do your “due diligence” about seeking knowledge.

In terms of appetite .. try for 5 small meals per day .. or get some Ensure if nothing else .. you MUST get nutrition into your body! Remember .. you are given but one body in this lifetime .. you must take care of that body .. so IT can take care of you!

This is a tough time for you .. be kind to yourself. Figure out what “fills your cup”. What gives you serenity. Then seek that out for yourself .. because you CANNOT “pour from an empty cup” .. you cannot give to anyone else or yourself if you are trying to operate on empty. Just know there is a rainbow at the end of the end of this tunnel .. you WILL get through this .. you WILL come out at the end! I have been off antibiotics and “stable” since May 2014. You WILL get through this .. IF you take good care of yourself .. exercise .. eat well .. be kind to yourself .. and seek serenity. Jo, keep coming back to our Forum .. you will find really kind helpful people here! Sending you a Big Hug! Katherine

@katemn

Hello Renee .. so glad you found our Forum! It sounds like the two of you are really going through a tough time! I was diagnosed in 2007 and unfortunately due to lack of knowledge and information did not go on the antibiotic treatment until October 2011. I was on 4-5 antibiotics for thirty months due to the severity of my condition. I was on: : Azithromycin 250mg/Avelox 400mg/2-Rifampin (rifubutin) 300mg/Amikacin 2ml-inhaled and Ethambutol 800mg.

Due to previous difficulty adjusting to drugs I chose to add just one antibiotic per week so that I would know which drug was/if caused a side effect. Yes I did have fatigue, sleep disturbance, loss of appetite .. BUT in time I could deal well with my life .. working out and living life! Now I have been “stable” on off ALL antibiotics since May 2014 .. so there IS life after the treatment!

I would suggest as you have time that you read through the past pages of the Forum .. you will see that EACH of us has had a different journey through the treatment and disease .. BUT we are coming .. or HAVE come out on the other side. Please do keep coming back .. you will find really kind supportive people here who will support you through this journey. Your husband is very lucky to have you by his side and be his advocate! I have been this advocate for my husband for many years as he has struggled with various health issues. Sending you both a Big Hug in this tough time. Katherine

You can find the link at:
https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/?pg=13

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Hello Katherine – I have not been in touch with the Forum for awhile. I joined back in November or December of 2015, when I first began treatment for MAC. I have not missed a week of taking the pills and if things are good, I am supposed to be ending the treatment in April. I wanted to ask some questions to see if anyone has any experience with what I have been dealing with. I tried to find the main Forum with all the emails so I could read through them again, but when I click on the link you give here in this email, I only can get one email which is your first email dated 2011. Can you give me some help in finding the main Forum? Should I write my questions in the same “reply” box that I am using now. Thanks for your help, Pamela

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